Posted (jooosh) in All Posts on October-10-2007

Oh how well our little Bun continues to do! We called this morning and heard the familiar voice of Nurse Angie. So comforting to know she’s there with our precious girl.

Angie said that Ella is behaving herself this morning. Earlier, she was awake and looking around at her hanging monkey. A little later she was put on her belly and she tolerated it well. She was given a small dose of fentanyl to ease the transition of being flipped with all those chest tubes.

From a numbers standpoint, Ella is doing great. Her saturations are pegging the 100% mark, and her blood gases at 8am this morning were just beautiful: pH=7.42, cO2=42, pO2=103. No major vent changes other then reducing her nitric oxide (iNOS) down to 1 in preparation for taking her of it completely.

There has been no output from her chest tubes so far today, and she only had 19ccs of total output yesterday. So good to see this go down and have Ella’s stats stay high! She still looks edemic around her head, neck, and chest, but it doesn’t look like it’s increasing.

I think our girl took the gold medal in the pee Olympics yesterday with a total urine output of 348ccs! This is so good for her to be putting out all this fluid. They also removed her foley catheter because she was peeing around it so much. Oh, and let’s not just leave it at that bodily function alone. She had herself some good poops too! =)

What goes in, must come out, and they are now giving Ella a total of 10ccs per hour of her food. What’s also good to hear is that with this volume she’s not been spitting up at all. Here’s hoping she continues this track!

Dr. Kays is back in town. We’ve not heard any word from him yet, but hope to speak to him today to discuss the latest plans.

Some of you have asked if we’ve been able to hold Ella. We haven’t yet, but we look forward to when we can!

The reason we haven’t been able to sooner is due to the multiple chest tubes in her body. The current ventilator she’s on would allow us to, but with all the chest tubes connected, it’s just not something they will permit at this time. I could also only imagine accidentally tugging or pushing one of her larger chest tubes, possibly causing her some pain. I wouldn’t want to risk it!

For these reasons we are willing to be patient for that sweet moment ahead. Be assured that you will all be there with us when that day comes =).

Thank you for your continued thoughts and prayers. May the peace of our Lord Jesus Christ be with all of you today.

UPDATE (12:45PM EST) by Tina: Dr. Kays just called with an update. He is pleased with Ella’s progress. He’s decided to turn off the nitric oxide. So far, she seems to be tolerating that well. Also, he is writing orders to slowly ween her off of the steroids. He decided to ween the vent to 50 breaths per minute. His plan is to get her off the nitric oxide and steroids completely, continue to increase the feedings and ween the vent slowly. This will force Ella to do more of the breathing on her own, strengthening her lungs.

I asked about chest tubes. Quickly, he stated that since the chest tubes are still draining, he has no plans to remove them anytime soon. Instead he wants her to get stronger and for the fluid to reduce even more before we think about removing any of the chest tubes.

Dr. Kays noted that her chest x-ray looked good, although her left side didn’t look quite as good as when he left town. I asked about her spending time on her belly. He reaffirmed that this is important for Ella’s care and will help both of her lungs expand and strengthen. I let him know that the nurses have not been flipping Ella regularly (it seemed like it was more of a verbal suggestion last week).

For example, today is the first day she has been on her belly since Nurse Kelly took care of her a few days ago. And I think that some of the nurses that do not take care of Ella on a regular basis are a bit more hesitant to flip her, especially when she makes a big fuss about it. Dr. Kays let me know that he thinks it is important enough to write clear orders for this to happen and to give doses of fetanyl if Ella needs it during the transition.

Thank you Lord for this great news from Dr. Kays. May you continue to work out all the details in your timing.

We also want to pray specifically for Ella’s strength and for no infection from the chest tubes that remain in her body.

We thank you for how far you’ve brought us along to this point and ask for your continued love and guidance through this experience.

Please continue to provide wisdom and discernment to Dr. Kays.

Help us to continue to seek you and be obedient.

In His precious name, Amen.

Kathy on October 10th, 2007 at 10:14 am #

Reading your story day after day helps me keep my own woes in perspective. Ella’s story is being used all of this country to minister to people, thank you for taking the time to share it with us.

Thank you Father for Tina,Josh, and Ella. Thank you for hearing our prayers and listening to our cries. May all of this point people to YOU!

Blessings today!!

Terri Trainer on October 10th, 2007 at 10:18 am #

I can’t wait for that little cutie to grow up so we can share with her everything we learned about her on the blog…saturation levels…blood gases…monkey friends…urine output…and poop!! Gotta love it!! Love you guys and lifting you up daily.

Joan Odell on October 10th, 2007 at 10:22 am #

Oh Father, Thank you so much for this precious little one and for the joy she brings to so many of us. Our prayers continue for her to strengthen in spirit and body and the wonderful day when Tina and Josh and hold her in their arms. Thank you for the love, guidance and endurance of patience you have supplied Tina and Josh with during these days. Hold the three of them close and keep them safe. Amen – Steve and Joan

Cathie Firestone on October 10th, 2007 at 10:26 am #

YEA YEA YEA!! What great news you have shared with all of us this afternoon! Bask in these moments…you guys deserve them! We continue to pray!

Loren L on October 10th, 2007 at 10:27 am #

I will pray for Ella to get stronger and for no infections, those are the worst.
God Speed

Adrienne (Melissa's sister!) on October 10th, 2007 at 10:58 am #

This is the best news a girl can get before heading off to bed! I am going to sleep so well tonight! I am in a mode of PRAISE!!!!

The Brittain Family on October 10th, 2007 at 11:27 am #

We are thrilled, absolutely THRILLED at the progress little miss baby girl is making. We continually offer up praises to our Father in Heaven Who is a God Who hears…isn’t it amazing that He loves to hear…from us?!?!? How great is that?!?!?! We haven’t stopped praying…for NO fluid, anywhere; for NO infections; for even more feedings and less ventilator; for perseverance and encouragement for all of you…we know it’s slow, but we also know it’s so worth it. Baby Pancake needs something special to remind her nurses that she needs to be flipped : ) Someone creative out there is going to have to think of something…. : ) I’ve been trying to think of this verse for a week now and it finally came to me just now:
“But we are not of those who shrink back and are destroyed, but of those who believe and are saved.” And it’s followed by “Now faith is being sure of what we hope for and certain of what we do not see.” Heb 10:39 and 11:1. Amen!
Love, Ruth for Jeff, Netanya, Jesse, Evelyn and Priscilla

Joel Snyder on October 10th, 2007 at 12:11 pm #

Ella, What great news and I am praying that you can continue with good stats and fluid reduction. Remember slow steady progress and all will be well. J&T thanks for the terrific update. Will check for the evening report. Love, Grnadpa!!!!!

Lyle Costas on October 10th, 2007 at 12:45 pm #

Josh & Tina, you both have a beautiful little girl. Ella is so strong because both of you are being so strong for her. The strength and love that you are giving and showing to her is giving her the will to live and be strong herself. I pray for her continued progress & daily milestones. Josh and Tina you are both truly amazing people, and little Ella is already blessed to have the love & strength that you offer her as parents.

Char Snyder Jordan on October 10th, 2007 at 4:33 pm #

Just had to check in on you folks before I go to work. We are so grateful for the forward progress that little-bun is doing. Hope all is well. We love you. aunt Char and Jim

Adrienne (Melissa's sister!) on October 10th, 2007 at 4:35 pm #

I vote to bring in a BIG OL PANCAKE FLIPPER/SPATULA — with a nice little sign that says “please don’t forget!”

Roxie (Adrienne's friend) on October 11th, 2007 at 4:53 am #

We are thrilled for all the good reports! Yea!!! for pee pee and Poopies!!!
Maybe the spatula could say, “Flip me please” with a happy face or even Ella Bella’s picture smiling! Lifting you in prayer Josh & Tina. Roxie

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